I am sorry to hear your symptoms are so bad and you are getting worse.

I think no matter how great our doctors may or may not be, ultimately patients with complicated and rare illnesses have to be proactive advocates if our circumstances do not fit in the square peg of average patients.

I think you said you dont seem to get relief from mestinon (which is surprising to me - it hasnt cured me but there is absolutely 100% no doubt it helps a lot) If you go to the link I posted in this forum and start reading through, it is pretty sophisticated in terms of cross referencing similar illnesses/symptoms/tests etc. It illustrated to me just how sensitive (unreliable) EMG is and most importantly it links to other neuromuscular illnesses that may be similar to MG.

I learned long ago that sometimes it helps to re-read complicated information in order to really digest it. For ex., I had seen on different ocassions in last month at least 3 websites with info about drugs that exacerbate MG but it wasnt until I started playing and reading on this website that I realized I had taken one of those drugs (Z-pac) in late March of this year (and my symptoms have gotten really really bad in past 4 months).

Good luck, hope you get some relief soon.

PS that said, I assume the info on website it accurate, not like I could really verify it anyway but I had to put that disclaimer in
Stephanie